Autism and Processing Social Information

July 31, 2015Activism/Advocacy, Autism and Aging, Autistic "Behavior", Communication, Hidden Curriculum, Social Considerationsart, autism, autistic, autistic experience, Diversity, employment, first person account, movement, neurology, sensory, speech, transitionadmin

My autistic neurology means that I am not good at picking up typical social cues, understanding complex social situations, automatically picking up meanings of idioms, or understanding the hidden curriculum that most others automatically pick up (Endow 2012). This means I often look naïve and gullible. The fact is I AM naïve and gullible when I try to use the social constructs of neuromajority folks to navigate the world around me.

When I was younger and deemed “in need of help” that “help” largely involved others trying to teach me to think and act as if I had a typically wired brain. I was never very good at it because no matter how many therapeutic social skills situations I availed myself of, because they were taught as if all participants had a neurotypical brain and my brain was not neurotypical, I mostly failed their learning agenda for me. My brain just plain works differently.

Here is an example: I rarely remember the same details about other people that most folks do. I remember the visual perception that came to me during an interaction, whether or not I was personally a part of that interaction. I pick up much information through seeing the sounds and movements of color people generate along with changes in the air space surrounding them as they speak and go about their business.

When I match the colors of others I can carry on a conversation. When our colors don’t match, the conversation usually doesn’t go well. I did not realize this way of perceiving and understanding the essence of people was not shared by others until recent years (Endow, 2013).

All through my life when others have tried to help me it has been minimally helpful to me. They would most often try to get me to understand the world in the way they understand the world. It was helpful information to know how others were thinking because it explained their behavior. Even so, learning how typical people think does not help me to then be able to think in their way.

Now that you have read the above example of one way I think visually by incorporating the sound and movement of colors people generate do you understand it? Probably so. And now that you understand how I think can you stop thinking the way you think and start thinking the way I think? Probably not!

The way we think is important because it is how we make decisions. It is part of everyday life. In my work life I might avoid business interactions with someone because they have ugly colors with sticky tentacles moving sneakily toward me. A typical person, who’s thinking is language-based, may understand that this potential business partner is devious and less than ethical in his practices. In essence, we both understood the same thing, but I had no way to explain it unless I translated my visual thinking into words. Visual is my native language; it is how I interface with the world around me and how I innately understand people.

Just like it would not be helpful for you to adopt my ways which are foreign to you, please understand that it is not helpful for me to always adopt your foreign ways when making decisions about people. We think differently and that is okay with me. I look forward to the day that my way of thinking is okay with the rest of the world.

In the meantime, if you are a parent of an autistic child, perhaps you might find it useful to ponder these questions:

Do you know how your autistic child remembers people?
Do you know what is important to your autistic child about other people?
Do you understand how your autistic child decides who to interact with and who not to interact with?
Do you honor this, even if you may not understand it? Many autistic children will not be able to explain to you how they think because it is not word based. You do not necessarily need to understand how your child thinks in order to honor it.

Note: Here is my first attempt to translate my visual thinking on the essence of people. After I translated my visual thinking into this sketchy language I was then able to go the next step to make a paragraph of words (which is the indented paragraph above that starts with “Here is an example”}. This is how my visual thinking gets translated to words. Once translated to words I can then speak the words. Today I can do this three-part translation

visual thought,
sketchy words,
paragraph words

to be able to speak my thought. I didn’t know until recently that most people do not need to do a three-step translation before speaking their thoughts. Most of the time these days, after decades of practice, my speaking appears quite fluid, though sometimes a delay is still apparent. It is often hard to translate because the world of English words is much more limited than my visual thought. It is like being confined to a limited choice board when what I really want isn’t an available choice.

The Essence of People

Melodious sounds
From your
Colors

Are music
To my ears

Or not

The patterns
Of swirls
Of the colors
Of you
Emanate
From your being

When matches
I make
I can
Conversate

We connect

My soul
With yours
Beyond words

But if not
Then
I can’t

Leaving
You to be you
And
Me to be me

Each
In
The essence
Of
Our
Being

(Endow, 2013)

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on July 30, 2015.
To comment on this blog click here.

Autism and Stubbornness

July 24, 2015Activism/Advocacy, Autistic "Behavior", Social Considerationsautism, autistic experience, Diversity, first person account, neurology, transitionadmin

I am an autistic woman. Most of my life people have let me know they think I am stubborn and controlling. Over time I have learned to hide the behaviors so people do not think I am stubborn and controlling. I understand you view my stubbornness as a bad thing so I have learned to hide it.

Today I would like you to consider that what you label as stubborn and controlling is often a solution to help us manage our anxiety and fear.

Whenever we have a fearful or anxious moment – and those moments tend to happen quite often -– we try to manage it. Everyone does this. One of the ways we all try to manage anxiety and fear is to take some control of the situation. This works for most people because they share a social understanding of just how to take control in a way that doesn’t tick people off.

Here is an example:

Imagine being in a situation where three friends have decided to go to a movie together. Jane offers to pick up Mary and Cathy. Both Mary and Cathy do not want to ride with Jane because Jane has been in several accidents due to inattentive driving.

Mary thinks about how she does not feel comfortable riding with Jane. Just thinking about it makes her feel anxious. She thanks Jane for her offer to drive and then tells Jane since she will be doing some errands near the movie theater she will meet her at the theater. Mary made up the part about needing to do errands. It wasn’t true at all, but Mary had the social understanding that it was perfectly fine to tell this sort of untruth so as to spare Jane’s feelings. Mary managed her anxiety and fear around Jane’s driving.

Cathy thinks about how she does not feel comfortable riding with Jane. Just thinking about it makes her feel anxious. She calls Jane and relays all of the points she can remember from the driving manual she used to study when preparing to take the driving test. Cathy insisted that Jane follow the information in this driving manual. She told Jane that if all drivers would follow the manual there would be fewer accidents. Cathy further tells Jane that she will not be a passenger in Jane’s car unless Jane agrees to follow all the safe driving rules as outlined in the manual. Cathy managed her anxiety and fear around Jane’s driving.

Mary and Cathy both felt anxious about Jane’s driving and needed to take control to relieve their anxiety. Each of them did so in their own way. Mary’s way worked and Cathy’s way did not.

For the autistic, the social understanding of how to be controlling without ticking others off doesn’t come naturally. Thus, our attempt to master anxiety and fear by using the universal strategy of taking some control tends to backfire for us. In fact, autistics are blamed for being too controlling as if it is a bad thing!

In the above example, Mary was just as controlling as Cathy. However, Mary’s behavior would never be labeled as stubborn and controlling, while Cathy’s behavior would quickly be labeled that way.

In our society we have decided that being stubborn and controlling is a bad thing. Most neurotypical people have learned to be stubborn and controlling in a socially acceptable manner. They are able to get away with it because their neurology supports an automatic social understanding, allowing them to act in a way that does not get labeled as stubborn and controlling even though they are being stubborn and controlling. Autistic people most often do not have this luxury of automatic social understanding. Hence, they manage their anxiety and fear with different behavior. Even so, just like the neurotypical person, they are managing anxiety and fear.

I am not condoning one set of behaviors over another – merely explaining that all people stubbornly use controlling behavior to manage fear and anxiety. The difference is that nonautistic people know how to do this in socially acceptable ways.

Next time you label an autistic as being stubborn or always needing to control things I am hoping that you might shift your thinking. Rather than blaming the autistic for bad behavior might you see the autistic is employing a solution to alleviate fear and/or anxiety? Might you join with the autistic in helping expand the repertoire of how to manage fear or anxiety?

The truth is, at the end of the day, nobody benefits from the blame game. The person being blamed for bad behavior feels awful. The person doing the blaming winds up getting stuck and unable to help solve a problem. Nobody wins in the blame game and yet we feel comfortable in playing that game because we can throw up our hands and declare it is the other person’s fault – nothing we can do about that!

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on July 22, 2015. To comment on this blog click here.

Using Autistic Strengths to Make Friendships Work

July 15, 2015Autism and Aging, Hidden Curriculumart, autism, autistic, autistic experience, Diversity, first person account, neurologyadmin

I am an intelligent autistic woman. I manage my own business, have raised three great kids and interface with the world around me with a fair amount of success. Not too shabby considering I lived in an institution as a kid, was homeless as an adult and used public assistance for some years.

Today I am content in my life. It is intentional. I have decided not only to be content, but how to intentionally let go of some things that used to bother me. I hope to get better with this over time because it is great feeling content most of the time and I would only like more of this good thing in my life!

Last week I was at a get together with a few of my closest friends. I think it is fair to say all of us in the group adore one another. None of us would ever intentionally say anything hurtful to any of the others. I know this without needing to wonder or question it. These particular friends would go to bat for me if I needed it. They are people I can count on.

Even though we have strong bonds of reliable friendship and even though these friends understand autism better than most people I know they do not share my autism neurology. Thus, just like I see the world through my lens of autism, they see the world through their lens of neurotypicality. This isn’t good or bad. It just is. We all see the world through our own perspective.

In this group of friends I told the story about a Facebook post from last winter. Just looked up this post and here is a screen shot of it.

Initially I had just posted the first line. Within a few minutes I received a phone call about my post. Once I explained I was told I had better put the explanation on Facebook because “Can’t screw worth a darn and then the rubber broke” has a totally different meaning for most folks. As soon as I heard this I immediately knew that different meaning! I hurried to Facebook, deleted my original post and then reposted with the meaning attached. And that is why last week, when Facebook came up in conversation, I told my friends about that Facebook posting – it was funny!

After hearing the story one of my dear friends said that everybody knew I was smart enough to have understood what those words meant when I posted them. In the moment, it felt awful to know my friend didn’t believe me and, like usual when a too-big emotion is triggered, I shut down and did not have any words. It took a week for me to be able to share that I really did have only the literal meaning of the words when I first posted. And yes, once reminded, I did know the social meaning.

Understanding social meaning has nothing to do with level of intelligence (Myles, Endow & Mayfield, 2013). It has to do with how my autistic brain works. Literal is my first language. My brain automatically does business in the literal mode. I must translate into social meaning because my brain does not automatically pick up the alternative (to literal) social meaning. In fact, I developed a strategy called Pause and Match around this and if you are interested you can read about it in Learning the Hidden Curriculum: The Odyssey of One Autistic Adult (Endow, 2012). I don’t always take the time to translate simply because I don’t always know which words are in need of translation.

It turns out everyone else has a shared social meaning for “can’t screw worth a darn and then the rubber broke” and it was nothing like my literal meaning! Once I am aware of the social meaning I can laugh at the funny picture people made when they interpreted my literal remark with a social meaning. And that is why I was telling this story – the literal/social play on words made it funny.

At this point in my life I am able to inhibit most mannerisms of autism when in public. People tell me I no longer look autistic. Even so, I am autistic. I have an autistic brain. It is hard to hide my true self all the time, but doing so has given me opportunities. One unintended effect is that people sometimes make assumptions about me when I make social errors, assuming intentionality (and sometimes rudeness) because after all, they think I am smart enough to know better (Endow, 2013).

When this happens I try to remind myself that just as I see the world through my autistic neurology so do my non-autistic friends see the world through their own non-autistic neurology. If my hurt feeling was caused by no ill intent on their part I determine to let it go. Just like people cut me some slack, I can cut my friends some slack.

Sometimes, at a later time, I might bring up the situation and explain the whole idea that intelligence has nothing to do with social understanding because I believe it is important for people to understand this concept. I especially do this if I experience a reoccurring hurt feeling over the incident. Because my emotions are often huge I can have a difficult time reigning in a too-big emotion, even if I cognitively understand that the situation wasn’t as huge as the ongoing recurring emotion – again nothing to do with intelligence, but in this case everything to do with my autistic difficulty in emotional regulation.

One thing that helps me is to think of something positive and meaningful that I admire about the particular person. I get something to concretely represent the positive connection I had with this friend during our time together when the too-big negative emotion was triggered. Sometimes I get an actual object. Other times I create a piece of art. For me this concrete art object solidifies the positive connection, making it bigger than the negative hurt feeling.

Then, each time the hurt feeling surfaces I look at the art work or object – either in real time or in my mind if I am not home to actually see it. Seeing a concrete object of positive relationship representation each time my brain replays the hurt feeling, after several instances, allows the positive feeling attached to the concrete object to become larger than the negative feeling that is not attached to something concrete. It is one way I have found to work with my autistic literalness in a positive way that serves me!

Once the hurt feeling has diminished I sometimes give the object or the art to my friend. This means that I no longer need it. Sometimes I explain my hurt feeling and how it is no longer there. Other times I do not. The giving of the object helps solidify the feelings of positive regard and caring I have towards my friend.

All in all, friendships are wonderful. Autistics want and can have friends. I have found it helpful to work with my autistic neurology rather than to try to make friendships work for me in a neurotypical way – the way that most social skills and friendship groups are taught.

I have learned over time that it is a plus to be able to use the strengths of my neurology to handle the huge negative feelings that get triggered in friendships only because we view the world differently – each of us having the point of view delivered to us through the lens of our own neurology. We all have to find our way in making friendships work. Good friends are important. We all want and need meaningful relationships. And in this way I am more like the rest of humanity than my autism can ever make me different!

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on July 13, 2015.

Autistic Burnout

July 7, 2015Activism/Advocacy, Autism and Agingautism, autistic, autistic experience, Diversity, employment, first person account, movement, neurology, sensory, speech, transitionadmin

Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works. Diagnostic deficits are based on the social and expected norms exhibited by the majority of people. Deficits are determined by a significant deviation from this majority norm. And, if you deviate far enough from the norm you get a label. If you have a group of deficits that line up with the autism spectrum disorder label then you get that label.

Once an individual has the autism label, we begin teaching skills to overcome the deficits. This is based on a societal assumption that it is important for all human beings to look like the majority of human beings. We call this look “normal.” It is expected that every human being look as close to normal as possible. It is further expected that all people who don’t look or act normal very much want to look or act normal. Hence, with this mindset, it makes sense to teach skills to overcome diagnostic deficits.

I have nothing against learning new skills that allow me to look like the majority of the people on the planet even though I am autistic. I like being able to converse in an expected manner and to inhibit all my autistic noises so as to keep earning an income. Even though this means I must have considerable down time to stabilize my sensory system every day, I still love being able to make this choice. I consider myself lucky to be able to do so because for most of my life my sensory system wasn’t organized enough to even allow this sort of choice.

However, there is an unintended negative affect that learning new skills is visiting upon me. It seems that a few skills allowed me better abilities to navigate in the world. Then, because I thought if a little bit is good even more would be better, I deliberately set out to learn more. In fact, I learned how to pass in the world as a typical person – to appear as if I am not autistic.

This was wonderful for a while because it allowed me to increase my standard of living. It allowed me to move from Section 8 Rental Assistance unit to a small home of my own. Once my children were grown up, with a new family size of one, I rose above poverty level income.

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy

But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.

In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.

I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.

We initially think it to be good because it opens more doors and allows more access to do/be what we want in life. Unfortunately, the unintended negative affect is that it raises the bar for us in all areas that are hard – the areas that got us our autism diagnosis in the first place (communication, social, sensory). Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.

I am writing about this because I hope people will become aware that what we are currently patting ourselves on the back for accomplishing in the field of autism – making autistics look indistinguishable from their peers – turns out to not be altogether good. We need to do better. Let’s stop patting our own backs and start listening to autistics. The lived experience matters.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on July 6, 2015

Autism and a Changing Sensory System

July 1, 2015Activism/Advocacy, Autism and Aging, Autistic "Behavior", Sensory Solutionsautism, autistic experience, Diversity, first person account, movement, neurology, sensoryadmin

One of the challenges of autism is sensory system difference. These differences are so prevalent that they are part of the diagnostic criteria for Autism Spectrum Disorder (American Psychiatric Association, 2013). This difference comes into play because an autistic neurology typically doesn’t automatically regulate sensory information. This can happen in a variety of ways and accounts for the sensory difference variation we see amongst autistic people.

Sensory information from the world around us is taken in, processed, stored and retrieved by all human beings. In those of us with autism there can be differences in any, some or all of these areas. This often translates to mean our sensory systems are “on edge” pretty much all the time (Endow, 2013, 2011, 2009, 2006).

To live more comfortably in a world that is not set up with our sensory needs in mind we must learn to bring intentional regulation to our sensory system because our body does not do that for us automatically. For youngsters this means an OT (Occupational Therapy) Sensory Evaluation is often done with the results of recommendations for a sensory diet. What is on an individual’s sensory diet plan are those activities, if engaged in, will help to manually regulate that person’s sensory system. Most older autistic adults have not ever had a formal sensory evaluation, but over time have figured out what sensory regulation modalities serve them best.

Something about autistic sensory difference that I do not see addressed in the literature is the fact that sensory system needs change over time. This is important for many reasons. Here are a few to keep in mind:

When youngsters get sensory evaluations that result in sensory diet recommendations that are actively utilized in daily life they become better regulated. This results in more engagement, increased learning and a happier child. However, over time, implementing the very same sensory regulating strategies doesn’t keep on delivering the same results. This is because the sensory system needs change over time (Endow, 2011).

For example, of the seven items on Madison’s sensory diet in second grade only two of those items serve her needs in third grade. Because four of the sensory regulation choices no longer worked for Madison she didn’t want to engage in those activities. She didn’t have the words or the communication ability to explain why she would push the “no” button on her talker. When I went in to consult the staff expressed frustration because Madison was clearly disregulated and yet, she refused to do her sensory diet, pushing “no” on her talker when offered choices.

Once the staff understood that Madison’s sensory needs had changed, rather than being stuck in blaming her for her lack of cooperation, they got an updated sensory evaluation. With the new sensory regulation strategies matched to her changing sensory system, Madison became more regulated and once again began making academic progress.

It is important for autistic adults to be aware of the fact that their sensory needs will likely change over time. When you think of it, it makes sense because all human beings experience this. When you are autistic and have a very sensitive system that does not often regulate automatically you need to be aware of this possibility and watch for the changes.

For example, Justin (age 52) was in the habit of taking two half-hour daily walks, keeping his TV volume level at 9 and having three hours each evening with no auditory input. This plan served Justin well for almost three years.

By age 55 he found that he had to increase the TV volume to 11 in order to hear it clearly) and only needed one hour each evening with no auditory input. He continued taking two half-hour walks each day.

Then, at age 56, taking walks became troublesome to Justin because his fluidity in movement had become more problematic. After trying several strategies Justin discovered that going back to three hours each evening with no auditory input along with listening to a music track of nature sounds that had a definite beat allowed him to sync his walking to the beat, and thus, was able to continue his two half-hour walks each day without experiencing the movement glitches.

Regardless of age, all autistics need to be kind to themselves when their sensory system changes. It isn’t easy because sensory differences, whether overload, not enough input, distorted input or a processing, storing or retrieving difference – all of it winds up affecting the way we behave.

I haven’t yet met an autistic that hasn’t, at some point in their life, been blamed for bad behavior. We can see behavior. We can’t always see what is causing the behavior. Whenever someone has a history of being blamed for bad behavior they learn to blame themselves whenever their behavior changes – even when the behavior change is a direct result of sensory system difficulties.

When we see the behavior before we recognize the sensory system change we cannot connect the cause and effect dots. For many of us, the learned pattern is to blame ourselves for our bad behavior. Anytime we attribute character flaw or blame to behavior we get stuck in problem solving.

In the above example, I started seeing Justin because he was having problems at work. He worked in an office and had started throwing office supplies. At first he threw paper clips across his desk, then pens and finally, when he threw a coffee cup that broke something, his job coach called me in. Justin’s job was on the line.

It took some time, but in the end we all learned that Justin’s throwing was helping his movement stay fluid and the nature music sound track helped his movement difficulties both at work and during his daily walks at home.

If the change in Justin’s sensory system with the resulting change in sensory diet hadn’t been discovered the outcome could have been very different. Justin could have been fired from his job and his life would have become smaller without work. In addition, he would have eventually needed to cut out going for walks as that movement became less fluid. Clearly, the movement support needed to be in place.

So, whether you are working with an autistic or are an autistic, please know that sensory system needs change over time. Often, your first clue that this has happened will be seen by a change in behavior. Whenever behavior changes the number one rule I have is to BE KIND.

When people are unkind to autistics they tend to assign negative intentionally to the autistic for the behavior and then blame the autistic.
When autistics are unkind to themselves they tend to blame themselves, assign character flaws (which are permanent and unchangeable) and over time become depressed over something that is nothing more than a symptom of their disregulated sensory system.

Whenever you are unkind in response to behavior – either to an autistic or to yourself (if you are the autistic) – you don’t do anyone any favors. Unkindness, blaming, assigned or taken on character flaws all lead to getting stuck in solving problem situations. Sensory system needs change over time. Know this; count on this. Your first clue will likely be something in the behavior arena. When behavior happens, BE KIND. Whether the behavior is sensory related or not it is most expedient to interface our best selves with solutions and positive regard for fellow human beings rather than being defeated by our own unkindness.

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on June 22, 2015